My Story: Whenever I Stepped Out, I Was Afraid I Would Have To Go The Washroom

“I was a normal child at the time of my birth. I could do everything that the normal child can do. I was able to do everything on my own, but suddenly with time, things changed the other way round. I started getting a frequent fever and feeling ill often. My parents took me to the doctor for treatment; however, he could not diagnose and it led to paraplegia of lower limbs. It was completely different life for me and of course, not an easy one. For my parents, I was everything. They did best with everything they could. At the age of 13, I was taken to the hospital, where I was rehabilitated and trained how to live an independent life and deal with my bowl and urine management. I took complete training but, implementing it in real life was totally different story. All of my life I went to normal schools where there were no accessible toilets; any public places where I used to go, there were no accessible washrooms. Imagine, one day of your life you have to live without a washroom, which I did in past 29 years. Every time I had to step out of the house meant that I had to be on less water, restricted food so that I could avoid as much as washrooms. The moment I used to step out, the fear used to be always in my mind that what if I would have to go washroom. This is how I grew up.

After completing my studies, I started my career with a small domestic centre which was on the 1st floor with no accessible lift and no wheelchair friendly washroom. For two years I continued like that. Every time I used to hop into a chair and move around slowly and then shift to a pot and then do my basic needs and shift back to get back to my work. It was the hardest time of my life to manage like this which ultimately led to back issues. After that, I thought to change a job and started looking for MNC as I knew that MNCs are well equipped and designed in a way where any special person would get all basic needs of life including a wheelchair friendly washroom. Yes, definitely there were wheelchair friendly washrooms, but it didn’t fulfill all the needs. A wheelchair friendly washroom means a light weight doors which can easily be pulled and pushed by a wheelchair user, wide enough doors, a low height mirror so that a person can see, and most important is the hygiene which should be maintained at any cost to avoid infection. People who are wheelchair users are highly prone to infections. Like every other wheelchair user, I was using a wheelchair washroom of my organization which unfortunately was used by normal people also. I started getting UTI infection. I took it very lightly and took normal medicines, thinking that it would be fine. This kept on happening for a couple of months. Ultimately when I caught the infection for the last time, I never knew what it would lead me to.

One day I was sitting in office and doing my work when suddenly I started getting fever and it rose to 104, I took medicines and managed to sit until the day end. By the time I came home, I was shivering uncontrollably. I had a fever for 5 consecutive days. On the 6th day, when my fever came down my body felt a sudden jerk and lost complete sensation below the chest. I could not understand what exactly had happened to me. I had no energy in my body even though the fever was down. I deicided to fly back home and there I went through several tests. I was diagnosed with a stone in kidney, but still, the question in my mind was why I had no sensation in my body?

As I couldn’t feel anything, I consulted many neuron and kidney specialists, but nobody was able to give me an absolutely correct answer. My doctor kept me on medication for UTI infection. Slowly because of this, I started going into a depression as it was such a bad feeling that I could not feel a natural call. Somewhere I was very determined that I need to get back to my normal state and be like before. As my infection reduced and my stone moved out of my body my sensation came back slowly and steadily, but it had affected my nerves. I had some kind of seared heaviness on my right lower body. Sometimes small things lead to miserable situations.

After so much of suffering, I made sure that when I get back to work I would ensure that I get clean washrooms. I spoke to every possible person in my organisation that could help me get rid of dirty washrooms and make rest all the things a feeble which were missing in the washroom.

This is not a luxury it is a basic need what our country needs desperately. Our country needs to wheelchair accessible in terms of washrooms so that every special person can use this anywhere and live a normal life.”

-Jolly Mohan

#WomenOfCourage